jose's bai slides
TRANSCRIPT
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Having a chronic, manageable disease isnot that great, if you’re the one
with the disease.
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Worldwide, only about 20% of the very sickest of the 33 million with HIV/AIDS can access treatment
Every day we still lose the joy of friendship and family, the gifts of so many, to AIDS
Global Funding Pulling Back
Long medication access Waiting Lists in the US
And ...
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What we expected when we started ...What we expected when we started ...
Abundant Resources!
Intractableresearchobstacles
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What We FoundWhat We Found
Few Resources
Great Research !!!
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Proof of concept: One man was already cured, in 2007.
His therapy cost $200,000, or about 1/3 of the lifetime cost of a treatment for a person with AIDS in the United States.
Already, his cure is leading to research that would duplicate the cure, but be much safer, by using a patient’s own immune cells.
Already, researchers—including companies in lower-income countries like India and Brazil and China-- are investigating ways to do the same thing cheaper.
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We need to bring AFRICAN researchers into the search for a cure.
We don’t want to find a cure for the US and then have to repeat the research all over again on a different subtype of the HIV virus, for Africa.
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The ObstaclesThe Obstacles
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We Persuaded the NIH to track funding for cure research.THEY DIDN’T WANT TO DO IT.
The AIDS Policy Project was the only group to ever ask how much the NIH was spending to CURE AIDS.
so is that a big enough slice for you?
We learned that the NIH was spending only 3 % of its aids research budget to find a cure.
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WE DEMANDED MORE.
We were the only group to demand more money for a cure:
$240 million per year in NIH funding.
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SOME EXCITING CANDIDATES FOR A CURE:
Vorinostat
Activates LATENT HIV in “viral reservoirs”. Already approved by the FDA for a type of skin cancer.
Yep, that's it.
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PD-1 Inhibitors
Also activates latent virus so it can be killed.
Immune Based Strategies
Alfa Interferon, for example.
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We wish we could put more money into it, but the budget is really tight this year with no sign of relief.
Best regards, Tony
Certain entrenched attitudes must be overcomes
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What do we want?What do we want?
A Scalable CureA Scalable Cure
$ 240 Million in new money from the NIH
More funding streams (private foundations; philanthropists)
Support for new ideas – More People like Gero Huetter
Better collaboration among researchers
Innovation in the way research is managed
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WE CAMPAIGNED FOR MORE MONEY. A LOT MORE MONEY.
Grassroots letter writing campaign to NIH
Private, Come To Jesus meetings with NIH officials
THE FIRST-EVER Town Meetings ABOUT CURE RESEARCH
Press Conferences
WE PUBLISHED THE FIRST, PLAIN ENGLISH REPORT ON STATE OF THE CURE, read by Nobel Prize Winners and NIH Officials
Somewhat Embarrassing FOR THE NIH in-Depth Magazine Articles
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Ha! We got a $27.5 Million Increase in New AIDS Cure
Funding over 5 Years
(It’s not enough.)
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Frederick Douglass said, “Power concedes nothing without a demand. It never did and never will.”
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What Would You Do to Cure HIV?May 25, 2011by David Evans
AIDS: Emphasis of research, funding shifts to cureMonday, July 18, 2011By Erin Allday
The Man Who Had HIV And Now Does NotMay 29, 2011By Tina Rosenberg
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Allies
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TIMOTHY RAY BROWN
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Petition to President Obama
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What Needs to Get Done?What Needs to Get Done?
More ResearcherCollaboration
Lots of pots of money—everything shouldn’t be decided at the NIH
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What Can You Do?What Can You Do?
Volunteer
Donate
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Jose [email protected]
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